you are flying a plane, you want to know more details, such as your altitude and the wind speed. If you are under water, you want to know other things. The display that signals whether you are on track is derived from hundreds of intricate gauges, sensors, computer chips, and monitoring devices. Each mechanism is designed to collect certain types of performance data; these data are then compared against standard specifications, and the results are analyzed to determine whether the data are signaling a problem that requires the operator’s attention. Some gauges are large and dominate the operator’s routine field of vision; others are more peripheral and show alerts only when significant problems arise.
The above analogy is useful in considering the monitoring systems that are used in determining the quality of child and adolescent health and health care services. The clinician examines an individual child and collects data from numerous sources—temperature, heart rhythm, height, weight, sleeping and eating habits, and so forth—before concluding whether the child is “healthy” or requires attention for some specific reason. In much the same way, health professionals and policy makers examine data from a variety of population surveys and administrative data sets in making judgments about the health and health care of children and adolescents. Yet the data system used to measure the quality of child and adolescent health and health care services is not as finely developed as the instrumentation in the above analogy or the collection of clinical data. Indeed, it may be inappropriate even to refer to the existing data sets on child health and health care services as a “system,” since these data sets consist of multiple, independent efforts that are largely uncoordinated and unrelated to each other. In many cases, data sets were designed for specific objectives without regard to how they fit within the larger landscape of child health measures. Furthermore, child and adolescent health data sets are not harmonized or coordinated with efforts that collect data about other aspects of development, education, or family and social contexts. The result is a tremendous wealth of data about many different specific dimensions of child and adolescent health and well-being, significant gaps with respect to important areas of health and selected populations, and the absence of an analytic framework that can provide routine guidance for general or even specific areas of concern.
The remainder of this chapter begins with a brief review of current methods used to collect data on health and health care. It then describes existing sources of these data for children and adolescents. Next, the chapter examines the limitations of these data sources. The final section argues for the need for a coordinated approach to integrate measures of child and adolescent health and health care quality.